Hi friends.
A short update for you all. It's the 29th October and I've just started my 5th week back at work. It's been an interesting time, with a number of colleagues (and friends) leaving the company following a round of redundancies. For me it has also meant a change of role, which will bring me some new challenges. I've been working in my old role for the last few weeks and I'm just starting to pick up the new role this week - it'll keep me busy I'm sure.
Health wise all appears good. I had a review with Tony on the 9th and he was happy with my bloods and how I felt. Platelets were a little low compared to normal, however they were at a level that was to be expected. I am feeling remarkably well, so I am extremely pleased with that. I'm due to see Tony again early in December & I'll update again after that.
The main legacy that this illness has left with me is mostly mental. Whenever there is an ache or pain there is a tendency to think the worst, especially if the symptom occurs at a lymph node location. I've been told the first year is the worst for this!!! To be fair, having read of the trials and tribulations of other patients, I think I have got off pretty lightly with only very slight chemo. side effects.
We are able to get out and about more now. Liz and I visited Melbourne just over a week ago, a bit of tourism plus Liz did the round the bay 210km bike ride on the Sunday - well done to her. We're sorting out a holiday to the north island of New Zealand later in the year. We chose to stay close since we didn't know how well I would be holding up.
Well I think that is all that I can tell you, we hope that you all stay fit and well and I'll update you in about 6 weeks.
ps Hairy has got a smattering of hair, very downy and just as grey!!
Alan
the Mellon's
Happy Families
Monday, 29 October 2012
Tuesday, 28 August 2012
After the Stem cell transplant
Hi there,
I'm well. As you know I am now recovering after having had the stem cell transplant (SCT) (my own stem cells).
A few days after the transplant as expected my blood count went through the floor and I was seriously neutropenic - at high risk of infection. Then it was for me to dodge infection until I was no longer neutropenic (Thursday 16th - day 9 post transplant). Luckily I did very well and missed out on any infections! The following day, Friday, they let me come home - with strict instructions to stay indoors. I've been home now 12 days, initially I was a little under the weather but ok. I was experiencing an upset stomach and nausea. However a chat with the support nurses led me to continue using the anti-nausea tablets regardless of 'apparent need' ie. even if feeling good. This has kept me well and I am now feeling good in myself. This treatment was certainly the hashest I have received, they told me that, but you tend to say to yourself "I did ok on the others!" - WRONG!!
Having left hospital the next steps are to again let my bloods recover to a 'normal' level, gain some fitness and muscle - I've lost 13 kilos in weight since November & based on BMI am not 'overweight' (Kyle disputes that!) Ha Ha. I will also head back to work and hopefully a very long and healthy remission. Of course, all this treatment has meant that my nice new hair has once again been flushed down the drain!! Ha Ha.
Our family are all well, thankfully.
Kathryn returned to Pittsburgh from London (Olympic city!!!) on 19th, it's her last year at California Uni. of Pennsylvania studying psychology.
Hayley is at Queensland University of Technology (QUT) studying primary education year 1.
Kyle is in year 11, so the big year next year!!
Liz is, as usual, very busy at work and we are trying to arrange a holiday, constrained somewhat by my weakened health and Kyles requirements for Triathlon training!! We have been severely limited since November in that I've had to be in striking distance of hospitals in case of infection.
Anyway I'm hoping to be 'back to normal' blood count wise in the next few weeks or so. I see Tony again in October, having seen him today.
Thanks for following the blog, it's been great to know that friends have 'got my back'. I really think the blog has been a great vehicle to keep me sane and everyone informed, I know many have found it informative and even entertaining!! Some haven't liked it for their own personal reasons, and I've been able to keep them separately informed. So from now on Hairy's journey is to stay in remission and I'll just be updating after the 3 monthly reviews starting in mid October. Hopefully there won't be much to say!
Thanks to you all for being there - below are some piccies of my wonderful support crew - the first photo was a professional photo taken before I lost my hair, and in those first hectic days of discovery! The constant in this journey has been my beautiful wife Liz and of course the demon threesome.
Kathryn - trying to parcel herself up for the journey to Australia
Hayley in her element, volunteering at the nursery in South Africa
Kyle showing off his (plastic) abs at school athletics carnival
PS I reckon I'll be getting back to some whitewater paddling by November - yippee!!
A fun video here!! https://vimeo.com/33521087
Alan
I'm well. As you know I am now recovering after having had the stem cell transplant (SCT) (my own stem cells).
A few days after the transplant as expected my blood count went through the floor and I was seriously neutropenic - at high risk of infection. Then it was for me to dodge infection until I was no longer neutropenic (Thursday 16th - day 9 post transplant). Luckily I did very well and missed out on any infections! The following day, Friday, they let me come home - with strict instructions to stay indoors. I've been home now 12 days, initially I was a little under the weather but ok. I was experiencing an upset stomach and nausea. However a chat with the support nurses led me to continue using the anti-nausea tablets regardless of 'apparent need' ie. even if feeling good. This has kept me well and I am now feeling good in myself. This treatment was certainly the hashest I have received, they told me that, but you tend to say to yourself "I did ok on the others!" - WRONG!!
Having left hospital the next steps are to again let my bloods recover to a 'normal' level, gain some fitness and muscle - I've lost 13 kilos in weight since November & based on BMI am not 'overweight' (Kyle disputes that!) Ha Ha. I will also head back to work and hopefully a very long and healthy remission. Of course, all this treatment has meant that my nice new hair has once again been flushed down the drain!! Ha Ha.
Our family are all well, thankfully.
Kathryn returned to Pittsburgh from London (Olympic city!!!) on 19th, it's her last year at California Uni. of Pennsylvania studying psychology.
Hayley is at Queensland University of Technology (QUT) studying primary education year 1.
Kyle is in year 11, so the big year next year!!
Liz is, as usual, very busy at work and we are trying to arrange a holiday, constrained somewhat by my weakened health and Kyles requirements for Triathlon training!! We have been severely limited since November in that I've had to be in striking distance of hospitals in case of infection.
Anyway I'm hoping to be 'back to normal' blood count wise in the next few weeks or so. I see Tony again in October, having seen him today.
Thanks for following the blog, it's been great to know that friends have 'got my back'. I really think the blog has been a great vehicle to keep me sane and everyone informed, I know many have found it informative and even entertaining!! Some haven't liked it for their own personal reasons, and I've been able to keep them separately informed. So from now on Hairy's journey is to stay in remission and I'll just be updating after the 3 monthly reviews starting in mid October. Hopefully there won't be much to say!
Thanks to you all for being there - below are some piccies of my wonderful support crew - the first photo was a professional photo taken before I lost my hair, and in those first hectic days of discovery! The constant in this journey has been my beautiful wife Liz and of course the demon threesome.
PS I reckon I'll be getting back to some whitewater paddling by November - yippee!!
A fun video here!! https://vimeo.com/33521087
Alan
Sunday, 12 August 2012
Taking the Stem Cell transplant path.
Back in July, Hayley wrote about next steps - she said -
"The next few weeks will see Mum, Dad, Tony and possibly some other oncologists for further opinion to decide if a stem cell transplant will be completed. The transplant involves one more batch of chemotherapy to completely wipe the immune system, before injecting the previously harvested stem cells, to trick the bone marrow into forgetting the disease. The process takes around three weeks, of which most will be spent in hospital, due to the risk that comes with having no white blood cells! For now, no decision has been made, but much research and medical advice will determine what the next step will involve."
Well that period of time led to some tooing & froing between, home, the hospital, the internet and other resources in order to make a decision. In between times I even found some time to go to work!! (Work have been brilliant throughout all of this illness ).
Well the upshot was that we decided to proceed with the stem cell transplant. Our view was that whilst the disease is down, give it another good kicking!! plus I've fared relatively well throughout the prior 8 rounds, so hit it whilst I am capable!! Our readings also indicated that transplant now, may prolong remission. Of course however there is a risk to the transplant which must be considered!!
So the process is (started July 30th)
Week 1 - Into hospital on Tuesday, received chemo on every day that week from Wednesday.
Week 2 - A nasty nasty line was put into my neck (vascath), plus a big chemotherapy day on Monday. Then I received the previously harvested stem cells (see Feb.) on the Tuesday.
Rest of week 2 cells to drop to zero. Alan feels generally sickly but fares relatively well.
Cells are currently down at zero (August 12th) & will be down for around another 8 days - HIGH infection risk. I have to watch any potential infection sites, like a small spot on my leg or any skin break.
Week 3 & 4 time to wait for cells to recover. Maintaining my platelet and red cell levels.
As soon as cells hit required level, I can go home to fully recover.
So that's where we, Team Mellon, are today. Thanks for reading the blog again, take care and have fun.
Alan
"The next few weeks will see Mum, Dad, Tony and possibly some other oncologists for further opinion to decide if a stem cell transplant will be completed. The transplant involves one more batch of chemotherapy to completely wipe the immune system, before injecting the previously harvested stem cells, to trick the bone marrow into forgetting the disease. The process takes around three weeks, of which most will be spent in hospital, due to the risk that comes with having no white blood cells! For now, no decision has been made, but much research and medical advice will determine what the next step will involve."
Well that period of time led to some tooing & froing between, home, the hospital, the internet and other resources in order to make a decision. In between times I even found some time to go to work!! (Work have been brilliant throughout all of this illness ).
Well the upshot was that we decided to proceed with the stem cell transplant. Our view was that whilst the disease is down, give it another good kicking!! plus I've fared relatively well throughout the prior 8 rounds, so hit it whilst I am capable!! Our readings also indicated that transplant now, may prolong remission. Of course however there is a risk to the transplant which must be considered!!
So the process is (started July 30th)
Week 1 - Into hospital on Tuesday, received chemo on every day that week from Wednesday.
Week 2 - A nasty nasty line was put into my neck (vascath), plus a big chemotherapy day on Monday. Then I received the previously harvested stem cells (see Feb.) on the Tuesday.
Rest of week 2 cells to drop to zero. Alan feels generally sickly but fares relatively well.
Cells are currently down at zero (August 12th) & will be down for around another 8 days - HIGH infection risk. I have to watch any potential infection sites, like a small spot on my leg or any skin break.
Week 3 & 4 time to wait for cells to recover. Maintaining my platelet and red cell levels.
As soon as cells hit required level, I can go home to fully recover.
So that's where we, Team Mellon, are today. Thanks for reading the blog again, take care and have fun.
Alan
Tuesday, 3 July 2012
One Big Fat Juicy R Word !
Remission. Rémission. Ремиссия. Remisión. 용서. Vergeving. Ri-mish-uhn. Ree-miss-hion. Remission.
The
same word written so that everyone from the 10 different countries that visit
this blog can understand. It’s meaning? Remission - the state of absence of
disease activity in patients with a chronic illness, either temporary or
permanent. Remission – the outcome of 8 long, gruelling months of chemotherapy.
Remission – the fantastic news for my amazing Dad, Alan. The statistics say that
this blog has had 7,968 views, a sign that we were never alone on this journey, so thanks to each and every one of you. Lets go back to just after the last blog
post to bring you up to date.
As
was mentioned in the previous post, Dad managed to get an infection followed by
a virus, which landed him back in the emergency department for another week in
hospital. He was allowed out once his bloods had been given the all clear and
was told strictly to stay home until his blood count had risen even further. Unfortunately,
even after following these precautions, he spiked another temperature and it
was back to the emergency room again for he and Mum. He stayed in for two
nights and was given the all clear after seeing the infection doctor. Since
then there have been no more spontaneous visits to accident and emergency for Dad,
woohoo!
June
25th was the day scheduled for the PET scan, which would be a full
body, colour scan of the body which would highlight any remaining cancerous
cells and determine if remission had been achieved. The scan went ahead all
fine and it was just the one week wait before seeing the oncologist to determine
the outcome. The week passed gruellingly slow for dad, who wasn’t really sure
what to expect. July 3rd came around eventually, the big day and the
appointment with Tony the oncologist. Mum had her positive thoughts flowing
round the house and Dad tried to keep the appointment from his mind, to avoid
going stir crazy!
After
a couple of gruelling minutes while Tony observed the scan results and Mum
tried to read his facial expressions he finally gave the verdict. Remission. As you can imagine, the
relief was beyond belief for Dad, who felt like asking the assistant to weigh
him again so she could see how much weight had been lifted from his shoulders!
The appointment then followed with some heavy discussion as to where to head
next. Currently, there is not enough research completed as to what the best
move is to take to prolong the remission. The next few weeks will see Mum, Dad,
Tony and possibly some other oncologists for further opinion to decide if a
stem cell transplant will be completed. The transplant involves one more batch
of chemotherapy to completely wipe the immune system, before injecting the
previously harvested stem cells, to trick the bone marrow into forgetting the
disease. The process takes around three weeks, of which most will be spent in
hospital, due to the risk that comes with having no white blood cells! For now,
no decision has been made, but much research and medical advice will determine
what the next step will involve. For today though, a celebratory lunch,
Guinness and cake for a well deserving man!
I
personally would like to thank everyone for the amazing support we have
received so far and I am sure the continued support through the future. To
everyone from St. Martins school who have cooked up some delicious dinners when
we were struggling for time, thank you so very much, both myself and my stomach
are so very thankful! J To everyone
else who have helped out in so many ways, we really do thank you! We could not
have coped how well we did without your thoughtfulness and caring wishes! And
of course, thank you to each and every nurse, doctor and staff member at
Greenslopes, particularly Tony, for helping to save my Dads life. You rock.
These
thank you messages are not the end, just long overdue on my behalf, so thank
you! I’m sure Dad will do his own update for this blog, since I am stealing his
thunder on the best blog post yet to reach you!
Lots
of love,
Hayley!
Thursday, 14 June 2012
Round 8 - that's the lot isn't it?
Well I'm at home today on day 23 of a normal 21 day cycle, I've been a bit lax on writing but there have been reasons. So let's go back to Day 1, 22nd May, sounds like a long time ago.
The day started with a visit to see Tony whom I hadn't seen for quite a while. You may recall I was waiting to find out "what next" well the meeting was very useful and has given me that direction and focus, which has relieved some of the mental stress I was putting myself under!! The immediate plan was to get through round 8, have a good break, cos there's no more chemo, then late June a PET scan, which Tony will review on 3rd July at our next meeting.
Whether we proceed to stem cell transplant or not will depend on the outcome of the review. Interestingly there is little documented evidence to say that doing the stem cell transplant increases the length of remission if actioned immediately, hence there is a view that you could be using 2 arrows from our small quiver of arrows for one remission, or you can save the stem cell for a potential second remission. It's all very confusing and an area which you have to leave up to the experts. We are positioned well with a good stem cell harvest in the bank.
After my meet with Tony it was off to day oncology for the first chemo - Rituximab / Mabthera - which appears to be one of the wonder drugs in treating Lymphoma's as well as other cancers. Remission rates appear to have increased since the addition of this drug to the protocol, now making it R-HyperCVAD. Following the Rituximab the main B cycle Hyper CVAD drugs started, I'm given methotrexate continuously for 24 hours, and this is repeated on the next day. Then Cytarabine is given twice (12 hourly) on the second day and also on the third day. This all pans out as complete for me on the Friday morning due to the late start on Tuesday. If you read the protocol for the treatment it says that you can go home at this point if your methotrexate levels are ok.
Well to be honest on the Thursday and Friday you are lying on the bed doing nothing, eating probably breakfast only and even thinking about food can be nauseating. I've found the B cycle mucks around with my body temperature which it did again on this occasion, however as soon as you hit 38deg alarm bells ring and testing begins for infections. Well the testing here included Dr. Whitby the infectious disease specialist. After a couple of days on antibiotics, he stopped the antibiotics and gave me a couple of tablets and said that if my temp didn't spike in the next 24 hours, it would not be a bacterial infection & would be chemo. related - which of course was the outcome. So I escaped from Ward 31 on Sunday and came home.
The following week was quiet initially, I got a blood test on the Monday and went in for platelets on Tuesday at which point I was neutropenic, which was relatively early in the cycle (day 8). All was well til Thursday afternoon when I got a temperature measured at home at 38.4deg. This meant a trip to the Emergency department again where the home thermometer's accuracy was shown up, 39.4 in hospital 38.7 on the home machine - better remember that for the future. This time I had an infection and received X-rays and antibiotics in the ED. I spent the night in the ED, not the most comfortable of nights but ok, there were literally no other beds available in the hospital. The next day I got up to ward 31 just after 11am and was hooked up to constant saline and periodic antibiotics, with blood cultures being taken to find out exactly which infection I had. This takes a couple of days and resulted in modified antibiotics for a few days. So by Monday the infection was under control and then I spiked another temperature! This time due to some form of virus - great!! More swabs and so forth, although no real change to any treatments - the best result for the virus was for my blood counts to recover! Finally bloods recovered on Thursday 7th June with neutrophils triggering the magic 1.0 target at a fantastic 1.46 yippee just some platelets to receive and then hopefully home! Of course there is always a sting in the tail - yep you guessed it I reacted to the platelets. Luckily they let me home last Thursday and I was under strict instructions from Liz to relax at home for a few days and keep myself to myself - yes dear!!
So next update will be after the PET scan and meeting with Tony. Thanks for following the blog and thinking of us all.
Alan, Liz, K,H,K
The day started with a visit to see Tony whom I hadn't seen for quite a while. You may recall I was waiting to find out "what next" well the meeting was very useful and has given me that direction and focus, which has relieved some of the mental stress I was putting myself under!! The immediate plan was to get through round 8, have a good break, cos there's no more chemo, then late June a PET scan, which Tony will review on 3rd July at our next meeting.
Whether we proceed to stem cell transplant or not will depend on the outcome of the review. Interestingly there is little documented evidence to say that doing the stem cell transplant increases the length of remission if actioned immediately, hence there is a view that you could be using 2 arrows from our small quiver of arrows for one remission, or you can save the stem cell for a potential second remission. It's all very confusing and an area which you have to leave up to the experts. We are positioned well with a good stem cell harvest in the bank.
After my meet with Tony it was off to day oncology for the first chemo - Rituximab / Mabthera - which appears to be one of the wonder drugs in treating Lymphoma's as well as other cancers. Remission rates appear to have increased since the addition of this drug to the protocol, now making it R-HyperCVAD. Following the Rituximab the main B cycle Hyper CVAD drugs started, I'm given methotrexate continuously for 24 hours, and this is repeated on the next day. Then Cytarabine is given twice (12 hourly) on the second day and also on the third day. This all pans out as complete for me on the Friday morning due to the late start on Tuesday. If you read the protocol for the treatment it says that you can go home at this point if your methotrexate levels are ok.
Well to be honest on the Thursday and Friday you are lying on the bed doing nothing, eating probably breakfast only and even thinking about food can be nauseating. I've found the B cycle mucks around with my body temperature which it did again on this occasion, however as soon as you hit 38deg alarm bells ring and testing begins for infections. Well the testing here included Dr. Whitby the infectious disease specialist. After a couple of days on antibiotics, he stopped the antibiotics and gave me a couple of tablets and said that if my temp didn't spike in the next 24 hours, it would not be a bacterial infection & would be chemo. related - which of course was the outcome. So I escaped from Ward 31 on Sunday and came home.
The following week was quiet initially, I got a blood test on the Monday and went in for platelets on Tuesday at which point I was neutropenic, which was relatively early in the cycle (day 8). All was well til Thursday afternoon when I got a temperature measured at home at 38.4deg. This meant a trip to the Emergency department again where the home thermometer's accuracy was shown up, 39.4 in hospital 38.7 on the home machine - better remember that for the future. This time I had an infection and received X-rays and antibiotics in the ED. I spent the night in the ED, not the most comfortable of nights but ok, there were literally no other beds available in the hospital. The next day I got up to ward 31 just after 11am and was hooked up to constant saline and periodic antibiotics, with blood cultures being taken to find out exactly which infection I had. This takes a couple of days and resulted in modified antibiotics for a few days. So by Monday the infection was under control and then I spiked another temperature! This time due to some form of virus - great!! More swabs and so forth, although no real change to any treatments - the best result for the virus was for my blood counts to recover! Finally bloods recovered on Thursday 7th June with neutrophils triggering the magic 1.0 target at a fantastic 1.46 yippee just some platelets to receive and then hopefully home! Of course there is always a sting in the tail - yep you guessed it I reacted to the platelets. Luckily they let me home last Thursday and I was under strict instructions from Liz to relax at home for a few days and keep myself to myself - yes dear!!
So next update will be after the PET scan and meeting with Tony. Thanks for following the blog and thinking of us all.
Alan, Liz, K,H,K
Sunday, 13 May 2012
Round 7 - quick update. Need eyebrows - use Nacho sauce.
Woohoo round 7 chemo is complete, I'm now in recovery stage waiting for blood counts to do their thing. Chemo started Tuesday 1st May with the usual cycle of loads of fluids making me put on 6kgs of weight over about 4 days, allied to this is lack of sleep due to the steroids and the need to lose weight! I usually have 2 down days where I don't turn on the TV, eat, read or do anything - a lady I met in the hospital said that on the Thursday I looked "dreadful". Most would say I look like that most of the time!
I was let out on the Saturday, relaxed at home on Sunday and due to a public holiday Monday was a little bit more active - some would say too active! I'll explain. Liz and I went for a walk on the local walking paths alongside the creek, we walked about 3.5kms which wasn't too bad since I was just out of hospital. Then a cool LL&B before heading home. An hour or so later we tripped back to the cinema with Kyle in tow, to see the 'Avengers' movie, followed by dinner at Hog's Breath Cafe. I chose nachos - my appetite was just getting back to normal. Anyway I enjoyed my meal, unable to eat it all but what can you expect. So we are sitting in the restaurant chatting & I felt hot, partly due to the spicy nachos and the reasonably warm restaurant. Next thing Liz is clutching my shoulders saying "Alan, Alan are you ok?" Well 30 seconds later I was ok and you guessed it I'd passed out into my nachos. Poor Liz was sitting opposite and looked up to find me slumped into the food, she had to revive me & wipe off the remnants of dinner - hence the reference to Nacho eyebrows!! So I'd definitely overdone it a bit that afternoon. After 10 minutes I was well enough to walk home and we've had a few post-event laughs over this and nachos seems to be the joke topic of the moment. As a penance I put my Facebook profile picture as a bowl of nachos, thankfully Kyle was a bit slow off the mark and there is no photo evidence of my misfortune. Mmmmmm (below!)
Last Friday 11th, I was back in day oncology to receive a very short chemo treatment and was neutropenic. Thankfully I was able to convince them that to avoid infection I'm better off at home and was not admitted into a boring hospital room with hospital food! I had to pop back Saturday morning (yesterday) for more platelets, which thankfully was a non event.
So, now I just have to let my blood counts recover and head back on the 22nd to see Tony and hopefully start round 8 which in theory is the last chemo. At the same time I'll be asking Tony where we go after round 8, ie. testing, defining whether I am in remission and so on. This will of course be the start of a new direction in my journey - so please think of me, pray if you wish and hopefully I'll be back to normal blood counts over the next few months, with work, life, and so on.
Alan
I was let out on the Saturday, relaxed at home on Sunday and due to a public holiday Monday was a little bit more active - some would say too active! I'll explain. Liz and I went for a walk on the local walking paths alongside the creek, we walked about 3.5kms which wasn't too bad since I was just out of hospital. Then a cool LL&B before heading home. An hour or so later we tripped back to the cinema with Kyle in tow, to see the 'Avengers' movie, followed by dinner at Hog's Breath Cafe. I chose nachos - my appetite was just getting back to normal. Anyway I enjoyed my meal, unable to eat it all but what can you expect. So we are sitting in the restaurant chatting & I felt hot, partly due to the spicy nachos and the reasonably warm restaurant. Next thing Liz is clutching my shoulders saying "Alan, Alan are you ok?" Well 30 seconds later I was ok and you guessed it I'd passed out into my nachos. Poor Liz was sitting opposite and looked up to find me slumped into the food, she had to revive me & wipe off the remnants of dinner - hence the reference to Nacho eyebrows!! So I'd definitely overdone it a bit that afternoon. After 10 minutes I was well enough to walk home and we've had a few post-event laughs over this and nachos seems to be the joke topic of the moment. As a penance I put my Facebook profile picture as a bowl of nachos, thankfully Kyle was a bit slow off the mark and there is no photo evidence of my misfortune. Mmmmmm (below!)
Last Friday 11th, I was back in day oncology to receive a very short chemo treatment and was neutropenic. Thankfully I was able to convince them that to avoid infection I'm better off at home and was not admitted into a boring hospital room with hospital food! I had to pop back Saturday morning (yesterday) for more platelets, which thankfully was a non event.
So, now I just have to let my blood counts recover and head back on the 22nd to see Tony and hopefully start round 8 which in theory is the last chemo. At the same time I'll be asking Tony where we go after round 8, ie. testing, defining whether I am in remission and so on. This will of course be the start of a new direction in my journey - so please think of me, pray if you wish and hopefully I'll be back to normal blood counts over the next few months, with work, life, and so on.
Alan
Thursday, 19 April 2012
Bashful, Doc, Dopey, Happy, Sleepy, Sneezy - the 6 platelets and with Grumpy Hairy Mel we have seven!
Well this week I was supposed to start Chemo 7, however as I suspected my platelet count was low. The count was actually 6 - so I've named them after the dwarves, with Hairy Mel taking on the role of Grumpy because he'd like to get on with the chemo!
To start the chemo I need to have a platelet count of 100, so I was only 94 short. Below are my counts from Monday and the 'normal ranges' (I'm often below these but it gives you an indication of what is happening in my body).
16/4/12
Haemoglobin 83 Low (135 - 175)
White Cell count 2.00Low (3.5 - 10.0)
Neutrophils 1.39Low (1.5 - 6.5 - less than 1.0 indicates neutropenia)
Platelets 6 Low (150 - 400 - 100 required to start chemo.)
Following my consult with Tony, I received 2 units of blood and 2 units of platelets on Tuesday, about 7 hours of sitting in the big green chair in day oncology. I saw Tony again today & platelets are up to mid 50's - promising. However haemoglobin is still low so back into day oncology tomorrow for 2 units of blood (about 4 hours).
Chemo is delayed by two weeks with round 7 starting on Tuesday 1st May. Tony is going on holiday and you know what, I can't really blame him!!
I'll update when something happens.
Have fun out there everyone.
Grumpy (platelet)
To start the chemo I need to have a platelet count of 100, so I was only 94 short. Below are my counts from Monday and the 'normal ranges' (I'm often below these but it gives you an indication of what is happening in my body).
16/4/12
Haemoglobin 83 Low (135 - 175)
White Cell count 2.00Low (3.5 - 10.0)
Neutrophils 1.39Low (1.5 - 6.5 - less than 1.0 indicates neutropenia)
Platelets 6 Low (150 - 400 - 100 required to start chemo.)
Following my consult with Tony, I received 2 units of blood and 2 units of platelets on Tuesday, about 7 hours of sitting in the big green chair in day oncology. I saw Tony again today & platelets are up to mid 50's - promising. However haemoglobin is still low so back into day oncology tomorrow for 2 units of blood (about 4 hours).
Chemo is delayed by two weeks with round 7 starting on Tuesday 1st May. Tony is going on holiday and you know what, I can't really blame him!!
I'll update when something happens.
Have fun out there everyone.
Grumpy (platelet)
Saturday, 14 April 2012
Chemo 6 - apologies for the delays in updating
Hi folks,It's been just over a month since my last update & that was pretty brief! I've noticed a few of you asking whether I'm still out here & surviving - well the short answer is yes. Originally Hayley was going to write this update to give some variation and her own personal style, however Uni. assignments and a workplace that thinks she is always available has meant this is not going to happen.
At last update I was at home on day 6 of Chemo 5, today is day 19 of Chemo 6 each round being 21 days. Well that Chemo 5, an A cycle, went pretty well with us being able to find time for a few days away during my "Up" time and to celebrate Kyles 16th birthday. We went north to the "Sunshine coast" to watch Kyle in the triathlon Australian Youth Championships where he came 8th. He performed really well and was happy with how the race had gone. On the first day it hammered down with rain (liquid sunshine?), making watching the event damp! In the afternoon we ended staying in our apartment watching the rain & reading / web surfing / tv watching. Strangely this was good because it was somewhere different & there were no chores etc to complete.
Below is a picture of the weather & lake from our balcony and of Kyle in the event. In Mooloolaba there was localised flooding with kids having to be evacuated from their day centre & water rushing through peoples garages and homes!!
We spent the rest of the time away watching the various triathlons in Mooloolaba - the World Cup races and the olympic distance Mooloolaba triathlon - where club members competed for themselves - similar to the marathon type events we see worldwide but in triathlon.
After this it was back to hospital for Chemo 6, B cycle - the not so friendly cycle. I started this round on 27th March. As usual I get loaded with fluids & the chemo cycle. Hospital food whilst ok, becomes unpalatable during the treatment, with, at one stage, even the mention of food making you vomit. I tend to get to day 4/5 and choose to not eat for a couple of days, being just capable of eating a weet(a)bix breakfast (luckily I have sufficient energy stores (fat) in my body to be able to do this). In fact day 4 is a complete waste of time, I doze, lie on the bed, don't read, don't watch TV, don't do anything - apart from have to pee every 45 minutes to 1 hour!! Liz did say "you looked worse than you think you did" - so obviously I felt 'ok', but was actually pretty rough.
To sum up the hospital phase of Chemo 6/B, I don't think it hit me as badly as the previous B cycles, I had two down days and then felt good! The Doc. chose to keep me in over the weekend, due to a raised temperature and potential of infection - days 5 & 6. I did however get to escape on the Sunday afternoon for a few hours, where I met my cousin Julia who was up from Ballarat in Victoria and later friends Dawn, Ben & Harry who were over from Perth (for Ben who was competing in the Surf Lifesaving Nationals - known as "the Aussies").
A couple of piccies with Julia at the "City beach" - I thoroughly enjoyed that afternoon, the company & escape to a warm Brissie afternoon away from hospital aircon, was great. You'll note I still have my red hospital admission band on my right wrist! The following day I was weighed in hospital, I'd lost a kilo in a day. However I kept telling the nurses that I'd eaten fish n chips, strawberries, cream and ice cream, plus chocolate AND lost weight - they didn't talk to me for a while!!!
I had to be back into hospital that evening (Sunday) and was released the following evening after receiving blood and platelets - to support my system. The following Saturday (Easter Saturday) I was back in for a few hours for routine blood tests and some further platelets. After this I kept myself to myself til the Tuesday after Easter because I was neutropenic and didn't have a white cell to my name! However all that changed on late Tuesday afternoon with the arrival of Pat, Sarah, Abbie, Lochie and Hope. They visited for a couple of days keeping us entertained and made good use of the pool (some even in their pyjamas).
Since then I've been out a bit but taking it easy, the B cycle does mean that my blood counts really drop hence being cautious and avoiding infection risk (check out the red line on the chart in an earlier post). Today Saturday 14th April - day 19, I'm due to see Tony the oncologist on Tuesday and start chemo 7, same day. I'm not sure whether my platelets will be high enough however. I say this because (you learn!) the chemo makes me itchy - I presume associated with the rash - as I scratch my itch (!!) I get bruises, this is an indication of a low platelet count and Tony will require my platelet count to be around 100 to start chemo. (My count on Easter Saturday was around 30, so if it dipped further after then, it has further to recover!)
A quick update on the Mellon family - just to prove that life goes on! Liz, Hayley and Kyle have been on Easter school break, so they start back on Monday, it will be business as usual from then on! Kathryn is still at Uni. in the USA, she recently broke the school pool record for the 1650 yard freestyle event, plus other positive achievements - so she is happy.
I start round 7 potentially on Tuesday so can definitely see light at the end of the tunnel. I'm 3/4 of the way through now with just one of each cycle to go - yippee. Of course after that I'm expecting testing and hopefully the R word (remission) - fingers crossed on that one please, prayers, thoughts / anything will be welcome!! This will be from late May so we will have to see how we go!
To all reading this, keep well, thanks for thinking of us all, apologies again for the tardiness in updating, I'll let you know how I get on during round 7 - promise!
Alan, Liz, Kathryn, Hayley & Kyle
At last update I was at home on day 6 of Chemo 5, today is day 19 of Chemo 6 each round being 21 days. Well that Chemo 5, an A cycle, went pretty well with us being able to find time for a few days away during my "Up" time and to celebrate Kyles 16th birthday. We went north to the "Sunshine coast" to watch Kyle in the triathlon Australian Youth Championships where he came 8th. He performed really well and was happy with how the race had gone. On the first day it hammered down with rain (liquid sunshine?), making watching the event damp! In the afternoon we ended staying in our apartment watching the rain & reading / web surfing / tv watching. Strangely this was good because it was somewhere different & there were no chores etc to complete.
Below is a picture of the weather & lake from our balcony and of Kyle in the event. In Mooloolaba there was localised flooding with kids having to be evacuated from their day centre & water rushing through peoples garages and homes!!
After this it was back to hospital for Chemo 6, B cycle - the not so friendly cycle. I started this round on 27th March. As usual I get loaded with fluids & the chemo cycle. Hospital food whilst ok, becomes unpalatable during the treatment, with, at one stage, even the mention of food making you vomit. I tend to get to day 4/5 and choose to not eat for a couple of days, being just capable of eating a weet(a)bix breakfast (luckily I have sufficient energy stores (fat) in my body to be able to do this). In fact day 4 is a complete waste of time, I doze, lie on the bed, don't read, don't watch TV, don't do anything - apart from have to pee every 45 minutes to 1 hour!! Liz did say "you looked worse than you think you did" - so obviously I felt 'ok', but was actually pretty rough.
To sum up the hospital phase of Chemo 6/B, I don't think it hit me as badly as the previous B cycles, I had two down days and then felt good! The Doc. chose to keep me in over the weekend, due to a raised temperature and potential of infection - days 5 & 6. I did however get to escape on the Sunday afternoon for a few hours, where I met my cousin Julia who was up from Ballarat in Victoria and later friends Dawn, Ben & Harry who were over from Perth (for Ben who was competing in the Surf Lifesaving Nationals - known as "the Aussies").
I had to be back into hospital that evening (Sunday) and was released the following evening after receiving blood and platelets - to support my system. The following Saturday (Easter Saturday) I was back in for a few hours for routine blood tests and some further platelets. After this I kept myself to myself til the Tuesday after Easter because I was neutropenic and didn't have a white cell to my name! However all that changed on late Tuesday afternoon with the arrival of Pat, Sarah, Abbie, Lochie and Hope. They visited for a couple of days keeping us entertained and made good use of the pool (some even in their pyjamas).
Since then I've been out a bit but taking it easy, the B cycle does mean that my blood counts really drop hence being cautious and avoiding infection risk (check out the red line on the chart in an earlier post). Today Saturday 14th April - day 19, I'm due to see Tony the oncologist on Tuesday and start chemo 7, same day. I'm not sure whether my platelets will be high enough however. I say this because (you learn!) the chemo makes me itchy - I presume associated with the rash - as I scratch my itch (!!) I get bruises, this is an indication of a low platelet count and Tony will require my platelet count to be around 100 to start chemo. (My count on Easter Saturday was around 30, so if it dipped further after then, it has further to recover!)
A quick update on the Mellon family - just to prove that life goes on! Liz, Hayley and Kyle have been on Easter school break, so they start back on Monday, it will be business as usual from then on! Kathryn is still at Uni. in the USA, she recently broke the school pool record for the 1650 yard freestyle event, plus other positive achievements - so she is happy.
I start round 7 potentially on Tuesday so can definitely see light at the end of the tunnel. I'm 3/4 of the way through now with just one of each cycle to go - yippee. Of course after that I'm expecting testing and hopefully the R word (remission) - fingers crossed on that one please, prayers, thoughts / anything will be welcome!! This will be from late May so we will have to see how we go!
To all reading this, keep well, thanks for thinking of us all, apologies again for the tardiness in updating, I'll let you know how I get on during round 7 - promise!
Alan, Liz, Kathryn, Hayley & Kyle
Monday, 12 March 2012
Posting Comments - a lesson from a teenager (ex)
Dear all,
a few people have had fun adding comments to the blog, so here is a small tutorial.
Having chosen a particular post to comment on - click on the green 'comments' link at the foot of the post. You may find the comments already displayed, in which case just move down to the comment box at the foot of the comment section. Type in your comment. At this point I recommend taking a copy of the text you type - there is nothing more frustrating than losing that fantastic witicism to the vagaries of software!
Below the comment box is a small box labelled "Comment as" with a drop down arrow. Click on the drop down arrow which provides options. Now if you have a Google / AIM or listed account you can select those options. If you use this I recommend that you have logged in prior to writing your comment!! If you don't have such an account you can select "Anonymous" or "Name / URL" - put in a name that I'll recognise so that I don't delete your comment. I tested with Name/URL (no URL required) and got a comment to review in my e-mail with that name listed - so it appears to work.
I hope this helps those who would like to leave their personal messages. Still have problems - email me & I'll post for you.
Update
I'm at home on day 6 of Chemo 5, so blood counts are dropping & I have to be a good boy and avoid infection for a few days. I have a short chemo session on Friday with blood tests and at this point we will see how I'm responding with respect to Neutropenia & blood counts for platelets etc. I'll let you know more when I know more!! 11:48pm - time for bed - nite nite all.
a few people have had fun adding comments to the blog, so here is a small tutorial.
Having chosen a particular post to comment on - click on the green 'comments' link at the foot of the post. You may find the comments already displayed, in which case just move down to the comment box at the foot of the comment section. Type in your comment. At this point I recommend taking a copy of the text you type - there is nothing more frustrating than losing that fantastic witicism to the vagaries of software!
Below the comment box is a small box labelled "Comment as" with a drop down arrow. Click on the drop down arrow which provides options. Now if you have a Google / AIM or listed account you can select those options. If you use this I recommend that you have logged in prior to writing your comment!! If you don't have such an account you can select "Anonymous" or "Name / URL" - put in a name that I'll recognise so that I don't delete your comment. I tested with Name/URL (no URL required) and got a comment to review in my e-mail with that name listed - so it appears to work.
I hope this helps those who would like to leave their personal messages. Still have problems - email me & I'll post for you.
Update
I'm at home on day 6 of Chemo 5, so blood counts are dropping & I have to be a good boy and avoid infection for a few days. I have a short chemo session on Friday with blood tests and at this point we will see how I'm responding with respect to Neutropenia & blood counts for platelets etc. I'll let you know more when I know more!! 11:48pm - time for bed - nite nite all.
Wednesday, 7 March 2012
Chemo 5 of 8 has commenced and an update on Stem cell harvests
Hi Guys n Gals,
I'm back in Greenslopes this time with a city view, room 22, they must have felt sorry for me!! I came in yesterday 6th, having been absent (awol possibly) since Sunday 26th when the harvests completed.
So updating from Hayleys post from a few weeks ago. Firstly we had to create an escape plan also known as epacse nalp, I was getting seriously stir crazy - some of you may have seen this on facebook.
Hayleys blog expected the harvest to be on or around Monday 20th Feb, no such luck, by the following Friday I was able to go home but the thought was that we had missed the stem cell harvest window of opportunity. Here is a picture of my blood counts - when you see neutrophils at zero, this is the Neutropenic isolation stage. (You can tell I was stir crazy!) The next day they shot up & I could escape.
Once I was home the next day I got the call "your stem cells are ready to be harvested" - so back to hospital on the Saturday after Fridays release! Stem cells are "immature" cells which become white cells, red cells or platelets as your body requires. Harvesting entails tricking your bone marrow to release stem cells into the blood stream, taking your blood through a machine which separates the blood by the density of its components, then spinning off the stem cell components. Each harvest for me takes about 6 hours if all goes well, 6 hours where you are unable to move the arm where they take off the blood or get out of the bed/chair!! In that time they effectively run your whole blood volume through the machine 3 times.
The aim of the harvest was to obtain 10 milli thingies per milli wotsits per kg of weight - just remember 10! With the stem cell count Willi (Wilhemina) the nurse, reckoned that a count of 19 would give us 1.9 - so that was the target for Saturday, the result of which we received on Sunday at 3.1 - so I was a very good boy - however - after the Saturday harvest I was scheduled for a routine platelet transfusion, my fourth. You can guess that after the 20 minute transfusion I reacted, pulse around 140bpm, shakes, very itchy rash - bugger!! Anyway they stabilised me & set me up for another night in hospital for monitoring.
Next morning Willi turned up expecting to see me stroll up at 8:30 & there I was in the bed - she was confused!! My stem cell count on Sunday was around 55, so that would deliver say 5.5, totalling 8.6 potentially, remember we needed 10. Back on the machine for 6 hours, this time with a really nice hot air blanket (not powered by me!) - this was ideal for an immobile state and with Hospital cool air con!! Here I am under the blanket with the machine to my left. Below are the harvested stem cells.
Finally I escaped the hospital Sunday afternoon. Monday I got the call that we totalled 9.5 (well done Alan) and no need for a further harvest. To put the 10 requirement into perspective, they use the following amounts for stem cell transplants - USA 2.0, Europe 2.5, private Doctors in Aus. 5.0 - so we have plenty for a number of transplants if required. The stem cells have been further analysed and separated off in a specialist lab and are now frozen awaiting any future requirement for transplant.
Following the harvesting I've had just over a week of recovery (I was very tired Monday/ Tuesday post harvest) where I have been able to do a few things - drinkies (non-alcoholic for me) with work colleagues Wednesday, watched some climbing / socialising Friday evening, went with Kyle and Liz to the Redcliffe triathlon on Sunday - so some fresh air there. I even went to work for a few hours Monday - ostensibly for lunch but that fell over, and I attended the Management meeting Tuesday - for brain stimulation prior to coming in for the Chemo - I'm not sure which is the lesser of two evils!!
I'm in now for chemo round 5, the A cycle which is the gentler of the two, hopefully I will be out on Friday, possibly Saturday - we will see! Counts will drop with the low expected a week on Friday 16th, however hopefully we could manage this with me being at home, it all depends on my blood counts!!
I hope this has filled you in with Hairy Mels goings on. I'll give another brief(er) update probably around the time of my next blood count low - so end of next week ish!!
Keep well, keep reading, thanks for any comments, and remember if you have a persistent ailment - see your Doctor!!
I'm back in Greenslopes this time with a city view, room 22, they must have felt sorry for me!! I came in yesterday 6th, having been absent (awol possibly) since Sunday 26th when the harvests completed.
So updating from Hayleys post from a few weeks ago. Firstly we had to create an escape plan also known as epacse nalp, I was getting seriously stir crazy - some of you may have seen this on facebook.
Once I was home the next day I got the call "your stem cells are ready to be harvested" - so back to hospital on the Saturday after Fridays release! Stem cells are "immature" cells which become white cells, red cells or platelets as your body requires. Harvesting entails tricking your bone marrow to release stem cells into the blood stream, taking your blood through a machine which separates the blood by the density of its components, then spinning off the stem cell components. Each harvest for me takes about 6 hours if all goes well, 6 hours where you are unable to move the arm where they take off the blood or get out of the bed/chair!! In that time they effectively run your whole blood volume through the machine 3 times.
The aim of the harvest was to obtain 10 milli thingies per milli wotsits per kg of weight - just remember 10! With the stem cell count Willi (Wilhemina) the nurse, reckoned that a count of 19 would give us 1.9 - so that was the target for Saturday, the result of which we received on Sunday at 3.1 - so I was a very good boy - however - after the Saturday harvest I was scheduled for a routine platelet transfusion, my fourth. You can guess that after the 20 minute transfusion I reacted, pulse around 140bpm, shakes, very itchy rash - bugger!! Anyway they stabilised me & set me up for another night in hospital for monitoring.
Next morning Willi turned up expecting to see me stroll up at 8:30 & there I was in the bed - she was confused!! My stem cell count on Sunday was around 55, so that would deliver say 5.5, totalling 8.6 potentially, remember we needed 10. Back on the machine for 6 hours, this time with a really nice hot air blanket (not powered by me!) - this was ideal for an immobile state and with Hospital cool air con!! Here I am under the blanket with the machine to my left. Below are the harvested stem cells.
Finally I escaped the hospital Sunday afternoon. Monday I got the call that we totalled 9.5 (well done Alan) and no need for a further harvest. To put the 10 requirement into perspective, they use the following amounts for stem cell transplants - USA 2.0, Europe 2.5, private Doctors in Aus. 5.0 - so we have plenty for a number of transplants if required. The stem cells have been further analysed and separated off in a specialist lab and are now frozen awaiting any future requirement for transplant.
Following the harvesting I've had just over a week of recovery (I was very tired Monday/ Tuesday post harvest) where I have been able to do a few things - drinkies (non-alcoholic for me) with work colleagues Wednesday, watched some climbing / socialising Friday evening, went with Kyle and Liz to the Redcliffe triathlon on Sunday - so some fresh air there. I even went to work for a few hours Monday - ostensibly for lunch but that fell over, and I attended the Management meeting Tuesday - for brain stimulation prior to coming in for the Chemo - I'm not sure which is the lesser of two evils!!
I'm in now for chemo round 5, the A cycle which is the gentler of the two, hopefully I will be out on Friday, possibly Saturday - we will see! Counts will drop with the low expected a week on Friday 16th, however hopefully we could manage this with me being at home, it all depends on my blood counts!!
I hope this has filled you in with Hairy Mels goings on. I'll give another brief(er) update probably around the time of my next blood count low - so end of next week ish!!
Keep well, keep reading, thanks for any comments, and remember if you have a persistent ailment - see your Doctor!!
Saturday, 18 February 2012
Groundhog day
G'day, G'day!
I have been a bit slack lately with my witty and hilarious blog posts (...) so thought it was about time I hit the keyboard to bring you all up to speed. I was all phsyced up to write to you all an awesome piece on the mysterious Kidney stone ordeal, which might i add, the drama was seriously down played by Dad on the blog, but his screams are still ringing in my ears.. heh heh heh! He will do anything to stop me from eating my delicious yellow thai curry, 6 hours in A&E is obviously proof!
Chemo 4 started on Tuesday 7th Feb with a session in Day Oncology and then straight up to the ward to be pumped with Cycle B drugs.
I'm sure you can remember cycle B from last time - exhausting, nausea and the big rash. This time it didn't fail to deliver yet again. Bed bound for a few days, suitcases under his eyes, vomitting and diarrhoea (yum) and the infamous rash, all making an appearence. The punishment for all of these symptoms? ISOLATION! Much to Dads dismay (and boy oh boy did he let the nurses know!) he spent the hours climbing up the walls, getting very frustrating for not being able to even leave his room. After completing his sentence of 48 hours in isolation after the symptoms has passed Dad could be heard from our house 15 minutes away negotiating with the nurses, time to go and sit in the sun!
Geoff, dads new friend, who is also suffering with the same type of Lymphoma who was in isolation at the same time as dad for the same condition, was let out of isolation after only 24 hours. Dad is still making reference to that one, days later...
Then Wednesday 15th hit and the neutropenia kicked in, the white blood cells dropped off the charts and it was back to lock down for dad. He is allowed out of his room this time, but he has to wear a mask. As he is feeling well and normal, he has been inventing new cheeky ways to pass the time. If you happen to be up on ward 31 anytime soon you will most probably notice a bald man with a series of different pictures drawn onto his face masks! (Avoid him at all costs! kidding!)
So now we sit and wait until Monday, which will be almost 2 weeks straight in hospital! Monday will see the stem cells hopefully being harvested to be frozen for future use. Once enough stem cells have been harvested he will be free to come home! The big key to harvesting enough stem cells is to avoid infection, which is why he has been kept in hospital for these couple of weeks. A small price to pay if the stem cells can be harvested correctly!
Hope this has filled you in a little bit!
Love to you all,
Hayley :)
I have been a bit slack lately with my witty and hilarious blog posts (...) so thought it was about time I hit the keyboard to bring you all up to speed. I was all phsyced up to write to you all an awesome piece on the mysterious Kidney stone ordeal, which might i add, the drama was seriously down played by Dad on the blog, but his screams are still ringing in my ears.. heh heh heh! He will do anything to stop me from eating my delicious yellow thai curry, 6 hours in A&E is obviously proof!
Chemo 4 started on Tuesday 7th Feb with a session in Day Oncology and then straight up to the ward to be pumped with Cycle B drugs.
I'm sure you can remember cycle B from last time - exhausting, nausea and the big rash. This time it didn't fail to deliver yet again. Bed bound for a few days, suitcases under his eyes, vomitting and diarrhoea (yum) and the infamous rash, all making an appearence. The punishment for all of these symptoms? ISOLATION! Much to Dads dismay (and boy oh boy did he let the nurses know!) he spent the hours climbing up the walls, getting very frustrating for not being able to even leave his room. After completing his sentence of 48 hours in isolation after the symptoms has passed Dad could be heard from our house 15 minutes away negotiating with the nurses, time to go and sit in the sun!
Geoff, dads new friend, who is also suffering with the same type of Lymphoma who was in isolation at the same time as dad for the same condition, was let out of isolation after only 24 hours. Dad is still making reference to that one, days later...
Then Wednesday 15th hit and the neutropenia kicked in, the white blood cells dropped off the charts and it was back to lock down for dad. He is allowed out of his room this time, but he has to wear a mask. As he is feeling well and normal, he has been inventing new cheeky ways to pass the time. If you happen to be up on ward 31 anytime soon you will most probably notice a bald man with a series of different pictures drawn onto his face masks! (Avoid him at all costs! kidding!)
So now we sit and wait until Monday, which will be almost 2 weeks straight in hospital! Monday will see the stem cells hopefully being harvested to be frozen for future use. Once enough stem cells have been harvested he will be free to come home! The big key to harvesting enough stem cells is to avoid infection, which is why he has been kept in hospital for these couple of weeks. A small price to pay if the stem cells can be harvested correctly!
Hope this has filled you in a little bit!
Love to you all,
Hayley :)
Wednesday, 1 February 2012
Chemo 4 delayed...
Hi again, just to let you know that my planned chemo has been delayed by a week. My blood counts were all good apart from my platelets which were in the mid 70's but had to be above 100. So I'm on hold for a week going back in next Tuesday.
Silver lining = I had previously bought a ticket to see Roger Waters performing the Wall, I had to sell this ticket. However I have just bought an equivalent ticket and saved $50!!! Yippee!! Prog rock here I come tomorrow!!
Also I can go up to Caloundra at the weekend to watch Kyle compete in his triathlon. So a positive there! Of course later in the the cycle sequence this week trips me up so I'll have to cope with that as it happens.
Check back in a week or so..
Alan
Silver lining = I had previously bought a ticket to see Roger Waters performing the Wall, I had to sell this ticket. However I have just bought an equivalent ticket and saved $50!!! Yippee!! Prog rock here I come tomorrow!!
Also I can go up to Caloundra at the weekend to watch Kyle compete in his triathlon. So a positive there! Of course later in the the cycle sequence this week trips me up so I'll have to cope with that as it happens.
Check back in a week or so..
Alan
Sunday, 29 January 2012
Big respect to all the Mummy's out there
Hi peeps,
Why the blog title you are asking??
Well we had quite an exciting day on Friday - NOT!! The day was going well, I'd cleared a number of chores and chose to take Hayley out for lunch before finally dropping the insurance paperwork for our December holiday off at the post office. Then I walked home.....and I started to get discomfort in my lower back - around the kidneys. Oh well not an issue, however as I got closer to home, the pain levels increased and of course every ache and pain is referenced to the Lymphoma and Chemo.
Well to cut to the chase, I got Hayley to take me to the emergency department - her stress levels were high, it was pouring with rain, heavy traffic and a Dad sitting in the passenger seat in significant amounts of pain and making sure poor old Hayley knew that!!! As it panned out the ED quickly gave me some morphine, did all their tests (would you believe, BP, temp & pulse were normal!) and sent me for yet another CT scan. Well by the end of the CT I'm afraid my language was extremely poor, pain was rated 11/10 and PLEASE CAN I HAVE MORE MORPHINE!!
So what was happening to poor old Hairy - it appears that I had a kidney stone - is that it you ask? Well with the amount of pain, and discomfort that came on on Friday, my respect for all those Mummy's has increased big time. I only had to cope with pain for a few hours and they do say a kidney stone is as bad as delivering babies!!! I was lucky that the meds I was given plus a bit of luck passing the stone meant that this episode was pretty short lived, thankfully. The hospital kept me in over night for observation and it appears that the kidney stone is probably related to my body trying to dispose of the Chemo & Lymphoma - so I am potentially at higher risk of these types of issues.
So apologies to the family for giving them quite a fright - it was nice that Hayley stood and held my hand, however I think it was her that needed the hand holding. I recommend that whoever you are that you avoid kidney stones - pain like you would not believe!!!
I'm due to start chemo 4 on Tuesday, which will be a B type chemo, and you may recall I had big reactions when I had the first B chemo with the rash, issues with body temperature control and so on. So it will be interesting to see how I react during this session. We will have to wait and see.
Prior to the kidney stone episode, during the week Tony sent me for another bone marrow biopsy. We had discussed the case for potentially taking bone marrow earlier rather than later for use in a stem cell transplant. The situation is similar in both cases of early or late harvesting, early harvesting requires the bone marrow to obviously be 'clean', late harvesting may be more difficult to achieve due to the impact of all the chemo sessions. Anyway the biopsy will give Tony a heads up as to where we stand at the moment. My head is saying that we may be a bit early yet.
I'll let you know how I get on with Chemo 4 this coming week. Behave all of you!!
Alan
Why the blog title you are asking??
Well we had quite an exciting day on Friday - NOT!! The day was going well, I'd cleared a number of chores and chose to take Hayley out for lunch before finally dropping the insurance paperwork for our December holiday off at the post office. Then I walked home.....and I started to get discomfort in my lower back - around the kidneys. Oh well not an issue, however as I got closer to home, the pain levels increased and of course every ache and pain is referenced to the Lymphoma and Chemo.
Well to cut to the chase, I got Hayley to take me to the emergency department - her stress levels were high, it was pouring with rain, heavy traffic and a Dad sitting in the passenger seat in significant amounts of pain and making sure poor old Hayley knew that!!! As it panned out the ED quickly gave me some morphine, did all their tests (would you believe, BP, temp & pulse were normal!) and sent me for yet another CT scan. Well by the end of the CT I'm afraid my language was extremely poor, pain was rated 11/10 and PLEASE CAN I HAVE MORE MORPHINE!!
So what was happening to poor old Hairy - it appears that I had a kidney stone - is that it you ask? Well with the amount of pain, and discomfort that came on on Friday, my respect for all those Mummy's has increased big time. I only had to cope with pain for a few hours and they do say a kidney stone is as bad as delivering babies!!! I was lucky that the meds I was given plus a bit of luck passing the stone meant that this episode was pretty short lived, thankfully. The hospital kept me in over night for observation and it appears that the kidney stone is probably related to my body trying to dispose of the Chemo & Lymphoma - so I am potentially at higher risk of these types of issues.
So apologies to the family for giving them quite a fright - it was nice that Hayley stood and held my hand, however I think it was her that needed the hand holding. I recommend that whoever you are that you avoid kidney stones - pain like you would not believe!!!
I'm due to start chemo 4 on Tuesday, which will be a B type chemo, and you may recall I had big reactions when I had the first B chemo with the rash, issues with body temperature control and so on. So it will be interesting to see how I react during this session. We will have to wait and see.
Prior to the kidney stone episode, during the week Tony sent me for another bone marrow biopsy. We had discussed the case for potentially taking bone marrow earlier rather than later for use in a stem cell transplant. The situation is similar in both cases of early or late harvesting, early harvesting requires the bone marrow to obviously be 'clean', late harvesting may be more difficult to achieve due to the impact of all the chemo sessions. Anyway the biopsy will give Tony a heads up as to where we stand at the moment. My head is saying that we may be a bit early yet.
I'll let you know how I get on with Chemo 4 this coming week. Behave all of you!!
Alan
Wednesday, 18 January 2012
Chemo schedule 3 - day 7
no updates since the third - sort of oops but also topics are a bit of a repeat. Currently midday at home on day 8 of third Chemo. cycle.
I saw the Doctor last Tuesday, before we started the chemo, it was a day of frustration and concerns. Frustration because I had to hang around the hospital for no real reason, concern because Tony was himself concerned about the node in my groin that was surgically biopsied. He thought it may have grown! So he sent me for a CT scan & I was admitted late Tuesday to be ready to start chemo 3 / see him on the Wednesday. Well thankfully CT results were good, nodes are shrinking, however that one node is taking longer - probably due to the invasive surgery. So, positive news there!
I've now completed the in-house schedule 3 chemo. and am currently sitting at home in a rather damp Brisbane, whilst my blood counts once again drop. I've taken a little longer to recover from the hospital time on this occasion, it's primarily nausea / loss of appetite plus tiredness. The nausea is managed via drugs, however you really do not feel ready for a good home cooked meal! Tiredness again relates to the drugs and disturbances received whilst in hospital, Monday I was unable to concentrate but was not tired enough to sleep.
I'll be back to see the doctor on Thursday (day 9) so may get admitted dependant on my blood counts / neutropenia - infection once again is the biggest risk and Tony's potential requirement to give me further platelet or blood products. Day oncology next Saturday - a short 30 minute IV, again depends if I am admitted prior to this due to the blood counts. After that is is recovering til 31st /1st when round 4 starts. (Eeeek)
So that is round 3 update. Interestingly my relatively rare illness is so rare that there was a guy about 10m away from me in the hospital, with the same illness, and running a month behind me!! Interestingly a different doctor with potentially differing treatments - more questions for Tony my Oncologist!!!!
Hayley got to fly down to Sydney to meet with Lesley, Barry, Hebe and special guest - Barry's credit card for a few days (shopping) - nice for friends to catch up and spend some time together especially before the girls start their Uni. careers. Afterwards she met up with her cousins and had a nice day or so, before returning to Brissie to "partee"!!
Kathryn flew out for Pittsburgh last Sunday, that month flew by very quickly! She is now safely at Uni. with her team mates after quite a long haul flight. Unfortunately I wasn't able to see her off at the airport, I don't think nausea and farewells go together. As it happened Liz said that the Airport was freezing and it was a good move to stay at home, so tearful hugs in the garage was the best farewell we could gather.
Some thoughts / quotes I read recently -
“You can not control what is dealt to you; you can only control how you deal with it”.
What lesson did I get from today? In the words of Woody Allen:
“If you want to make God laugh, tell him about your plans.”
I saw the Doctor last Tuesday, before we started the chemo, it was a day of frustration and concerns. Frustration because I had to hang around the hospital for no real reason, concern because Tony was himself concerned about the node in my groin that was surgically biopsied. He thought it may have grown! So he sent me for a CT scan & I was admitted late Tuesday to be ready to start chemo 3 / see him on the Wednesday. Well thankfully CT results were good, nodes are shrinking, however that one node is taking longer - probably due to the invasive surgery. So, positive news there!
I've now completed the in-house schedule 3 chemo. and am currently sitting at home in a rather damp Brisbane, whilst my blood counts once again drop. I've taken a little longer to recover from the hospital time on this occasion, it's primarily nausea / loss of appetite plus tiredness. The nausea is managed via drugs, however you really do not feel ready for a good home cooked meal! Tiredness again relates to the drugs and disturbances received whilst in hospital, Monday I was unable to concentrate but was not tired enough to sleep.
I'll be back to see the doctor on Thursday (day 9) so may get admitted dependant on my blood counts / neutropenia - infection once again is the biggest risk and Tony's potential requirement to give me further platelet or blood products. Day oncology next Saturday - a short 30 minute IV, again depends if I am admitted prior to this due to the blood counts. After that is is recovering til 31st /1st when round 4 starts. (Eeeek)
So that is round 3 update. Interestingly my relatively rare illness is so rare that there was a guy about 10m away from me in the hospital, with the same illness, and running a month behind me!! Interestingly a different doctor with potentially differing treatments - more questions for Tony my Oncologist!!!!
Hayley got to fly down to Sydney to meet with Lesley, Barry, Hebe and special guest - Barry's credit card for a few days (shopping) - nice for friends to catch up and spend some time together especially before the girls start their Uni. careers. Afterwards she met up with her cousins and had a nice day or so, before returning to Brissie to "partee"!!
Kathryn flew out for Pittsburgh last Sunday, that month flew by very quickly! She is now safely at Uni. with her team mates after quite a long haul flight. Unfortunately I wasn't able to see her off at the airport, I don't think nausea and farewells go together. As it happened Liz said that the Airport was freezing and it was a good move to stay at home, so tearful hugs in the garage was the best farewell we could gather.
“You can not control what is dealt to you; you can only control how you deal with it”.
What lesson did I get from today? In the words of Woody Allen:
“If you want to make God laugh, tell him about your plans.”
Wednesday, 4 January 2012
The start of a new year
Well they finally let me out, not however in time for my birthday, I was let out on Monday since my blood count had recovered somewhat in the time from New Year to the 2nd.
We celebrated Kathryn's 21st birthday and my own birthday in the hospital ward, Cheesecake & Tiramisu being the order of the day for each occasion respectively. We arranged for KT to have a special treat of Skydiving over Redcliffe - working on the principle that the bungy didn't break on her 18th, so no bungy this time.
Anyway she landed safely a few days after her birthday, due to weather constraints. New Years for me was low key - watched a film & Stephen Fry on TV then off to sleep - I couldn't even see the city fireworks from where the ward was. At that stage I was still not allowed out of my room without either Baxter or a mask due to the neutropenia. I received both blood and platelet transfusions to help my recovery.
(from facebook - A rare wilderness sighting, Dad just warm enough in long trousers, sweat shirt and Mountain fleece, Hayley baking in shorts and T shirt. What is this Chemo doing to me???!!)
The first platelet transfusion set the rash off, with lots of temperature and itching, plus the reaction set my pulse racing to 130+bpm, not pleasant I can tell you! Future transfusions were preceded by meds to stop such reactions. By Monday of this week my blood count had recovered, aided by the transfusions plus the demon rash had finally faded leaving just bruises that are due to the low platelet count. So they let me out to the care of my family, I still have to be cautious of infection plus any illness and avoiding highly populated areas, however home is home. I'm back into hospital next week, 11th, Cycle 2 schedule A. So no peace for the wicked, here's hoping everyone had a great New Year and looking forward to a fantastic 2012.
ps. I heard from our new friends in Pennsylvania that they had a great time in the lead up to Christmas, with little Zachary celebrating his birthday on the nearby ski slopes. So that's good news that our booking did not go to waste.
We celebrated Kathryn's 21st birthday and my own birthday in the hospital ward, Cheesecake & Tiramisu being the order of the day for each occasion respectively. We arranged for KT to have a special treat of Skydiving over Redcliffe - working on the principle that the bungy didn't break on her 18th, so no bungy this time.
The first platelet transfusion set the rash off, with lots of temperature and itching, plus the reaction set my pulse racing to 130+bpm, not pleasant I can tell you! Future transfusions were preceded by meds to stop such reactions. By Monday of this week my blood count had recovered, aided by the transfusions plus the demon rash had finally faded leaving just bruises that are due to the low platelet count. So they let me out to the care of my family, I still have to be cautious of infection plus any illness and avoiding highly populated areas, however home is home. I'm back into hospital next week, 11th, Cycle 2 schedule A. So no peace for the wicked, here's hoping everyone had a great New Year and looking forward to a fantastic 2012.
ps. I heard from our new friends in Pennsylvania that they had a great time in the lead up to Christmas, with little Zachary celebrating his birthday on the nearby ski slopes. So that's good news that our booking did not go to waste.
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